It’s been five years since I’ve felt well. Well in the sense of waking up full of energy and without pain.

Five. Years.

I had cause to reflect on this when I received a letter from the hospital informing me that my referral had expired. This fact means another 12 months has elapsed in my ongoing search to find that elusive wellness that I have sought for five years.

It is an absolute mind-f%ck when your body starts to rebel on you. The first time I dropped a cup of hot tea on myself because my hands just failed to keep hold of it, I broke down in tears and then threw the offending cup across the room in frustration. This would be the first of many things I would drop, many things that would break, many things I could no longer rely on from my body which appeared to be imploding on itself.

Other weird body phenomena in this time has included; passing out in the middle of the night and waking up with a black eye (twice), my legs melting out from under me causing me to fall headfirst into the train, unexplained chest tightness and dizzy head after a normal day of gallery hopping, excruciating cramps on the tops and bottoms of my feet at the same time, aches in every joint of my body – and I mean every joint, stabbing pains in feet/ legs anywhere, dropping hands – seriously things just fly out of them, a loss of loudness of my singing voice, a softening of my speaking voice, levels of tiredness that induce hysteria, seriously high drama PMT and I could go on and on.

I’ve never been what one might picture as a “healthy” person. I’m fat, I’ve always been fat and I used to drink like a fish/ stay out too late/ work too hard/ stress out about stupid shit and whole bunch of other things that sensible people don’t do. But I was also someone with a lot of energy who could run, lift stuff, bike ride to work, swim laps, dance for hours and walk anywhere. And I was someone who could, with a blazing intensity, think/ write/ read/ absorb and create until the early hours of the morning and still turn up to a paid job and be good at it. I had my health.

Entering into the worlds of intersecting chronic illnesses has taught me an awful lot about patience.

At a very basic level, just waiting for appointments requires levels of patience that I struggle with as a person who values my own time. Hours spent in crowded waiting rooms, surrounded by people who look broken by the health system. Patience for the assumptions that others make about why you’re there, and the truth a heartbreaking reality you have to swallow on your own because the truth actually hurts that much.

Other forms of patience include explaining your “story” over and over – a narrative of deficit that demands a razor sharp accuracy; when did you first start feeling like this? – when was the last time? – the first time? – what have you tried? – what haven’t you done right? – why are you asking for an answer when I know the answer is YOU’RE TOO FAT TO DESERVE BEING WELL!

What you are not told when you’re young is to record the first time something didn’t feel right in your body. As women, especially as FAT women, we are told that our bodies should endure pain because we’re women but also because of our “choices”. We are told that we’re making it up, that it doesn’t make sense, that if we did less of this or more of that, then maybe we’d feel better. We are forced to try one more medication – just in case this one is the one – but then we have to take something else to deal with the side effects of that.

In my life I’ve been on maybe 50 different medications for a variety of poorly diagnosed things ranging from stock standard depression to PCOS to chronic fatigue, restless legs, psoriasis and arthritis. There is still no definitive answer.

I have tried going gluten free, sugar free, dairy free and FODMAP free. I have taken naturopathic potions and pills, have spent huge amounts of money on myotherapy, osteopathy, acupuncture and basically anything that might bring some relief.

Amongst the diagnostic tests I have been subjected to are; cardiac stress tests, MRIs, a neurological exam, ultrasounds, x-rays, about a million blood tests and a bone scan which involves being injected with radioactive stuff and then – well your bones get scanned.

(I will never forget hearing the sound of my own heart – it’s apparently a healthy heart by the way. Nor will I forget the experience of running on a treadmill, wired up with my boobs out while three people watched and assured me that they “do this everyday” – modern medicine is freaking weird.)

From my very first dietitian as a 10 year old to my very latest endocrinologist as a 39 year old who instead of explaining to me why I hadn’t had a period for 2 years followed by bouts of excruciatingly painful PMT, decided it would a good time to suggest I try SlimFast if I wanted to lose weight; the efficacy of the medical model has been a mystery to me.

All of these experiences have taught me less and less about why my body does these things. Medicine tries to diagnose, to find a pattern in which all of the signs and symptoms can label us into a little neat box. We become reduced to the list of what ails us, without considering the totality of everything that we are.

The times I have felt truly well in the past 12 months have been when I’ve shared a private joke with Mr, or we’ve just been hanging out with our pets. It’s been when I have walked, at no particular pace in the sun around my neighbourhood and sat drinking tea and reading something good. It’s been when I’ve helped someone to see their own potential through just talking about it, and what they really want and what their real dreams are. It’s been when I’ve accomplished something real that I’ve been working on for a while and when I see others stepping into their own empowerment.

In another life when I wrote essays about Community Cultural Development I talked about the “Cult of Wellbeing” as something that is commodified and sold to us. It is a force of hyper-capitalism that compels us to buy our way out of unhappiness with a superfood, or the perfect pair of yoga pants or a slim-shake (or indeed a community arts project).

Of course Big Pharma is the ultimate tool of hyper-capitalism. The pills that deaden our response to what is clearly a f%cked up situation are sold to us as a cure for the stress-induced illness that continuous consumption creates. Now before you jump to any conclusions, trust me I know that illnesses, pain and suffering are real. I carry a few of them around in a less than visible way, and I get it, some medicine saves lives.

But me, I am consciously opting out of health and into balance. I am reducing my consumption of “wellness” and instead focusing on moments of well-being. I am stepping back from the rigid direction of medical practitioners and making my own decisions about what pain I can and can’t live with.

The truth is that when we tune into our body, we can give it exactly what it needs. For me, it has always been more vegetables and resting my mind and my body that does the trick. That and a cup of tea, a book and a big belly laugh with someone truly loved.